Recently diagnosed

[Guest guest]

Hi everyone,

It feels like I already know everyone as I have been reading the posts but have yet posted anything myself. I am 24 years old and was diagnosed with PSC in September. Around the end of August I started to not feel like myself. For example my stomach would hurt for no reason or I would all of a sudden throw up after I ate. I also started becoming so lethargic. For example, before work I would normally jump up, work out and head to work. But I was unable to work out let alone drag myself to work. Soon my upper back started hurting and I couldn't sleep at night. I also started noticing my pee turning orange. I went to a walk in clinic and the doctor decided not to run tests but figured my back pain was due to my not sitting straight at work. I knew this was wrong as I am really conscience about my posture since I am six feet tall. Then I officially stopped going to work because I even found it hard to walk around my apartment. I finally checked myself into ER and after running blood tests the doctors noted that my liver enzymes were high and felt I probably had gall stones. The next day I went for an ultrasound and a CT scan and no stones were seen so they scheduled me for an ERCP as they thought I had stones in my bile ducts. The pain was so bad that I was given Demoral every 3 hours. I soon started spiking fever every 4 hours and was completely jaundiced. After completing the ERCP my doc said there were no stones and had something called PSC. Since this time I have been trying to deal with all of this and find it extremely scary. My parents flew in from Calgary as soon as I was admitted into the hospital. I was given a 4 week leave of absence to recuperate after this horrible bout of bacterial cholangitis.

My family has been amazing but soon I am going back to Toronto and am really scared. I have all these tests I still need to take. For example I recently saw a liver specialist and he said that he is almost positive I have Chrons even though I haven't had a colonoscopy. I have had IBS since I was a kid so he is putting 2 and 2 together I guess. I also have to get another ERCP, a bone density exam, as well as go and talk to the transplant specialists at Toronto general. Last year I was such a healthy and happy 23 year old--just graduated from university and everything. I am just worried on how all of this will affect me . I am trying to be strong. Thanks for listening.

SRPMSN 8 with e-mail virus protection service: 2 months FREE*

[Guest guest]

Welcome! We have a couple of members who have had PSC for 30+ years and are

just now

experiencing difficulties. I've had UC for about 26 years now, still have

all my equipment (for what it's worth!) except my gallbladder.

Diagnosis IS a tough time - hang in there. Under " Links " , there's one

called " New members help " that contains a lot of good information to get you

started. They will answer some of the more common questions. Keep asking!

You can also " mine " the archives at

http://groups.yahoo.com/group//messages. Just sign in to Yahoo

and search on any topic. Under " Photos " you'll be able to see some of us

(and our pets).

Since I'm an engineer, I can't resist statistics, so here's data on what

I've been able to glean from what members have said over the years (we have

well over 550 members now):

Age Number

Distribution <9 4 M = 203

by age <19 15 F = 135

<29 40

<39 54 UC = 147

<49 40 Crohns = 24

<59 37 IBS = 2

>59 18

As we usually say, glad you found us, but sorry you found us. This is an

extremely knowledgeable group - you'll get your questions answered. Take

care.

Arne

52 - UC 9/77 - PSC 4/00

Alive and (mostly) well in Minnesota

-----Original Message-----

From: Shahina Patel

Hi everyone,

.... Last year I was such a healthy and happy 23 year old--just graduated

from university and everything. I am just worried on how all of this will

affect me . I am trying to be strong. Thanks for listening.

SRP